Shawn Sullivan: Thank you, legislators, for supporting ALS registry

Thursday

Nov 29, 2007 at 3:15 AM

A couple of weeks ago, the United States Senate's Health, Education, Labor and Pensions Committee unanimously gave its support to the ALS Registry Act, which seeks to authorize Congress to establish the first-ever national registry for patients with Lou Gehrig's Disease at the Centers for Disease Control and Prevention.

The act's on a roll. A few weeks earlier, the U.S. House of Representatives passed the act by a vote of 411 to 3 — now that's a major example of bipartisan support if there ever was one.

Now it's off to the Senate, where 67 senators already have agreed to cosponsor the bill. That's more than a majority of the senators, and it's certainly a crucial two-thirds of them. Victory is near.

While that's great news, it's no accident. The ALS Registry Act is the product of hard work by advocates and support from legislators. In fact, many of the bill's most dedicated and effective champions are people with ALS — or "pALS," as they are sometimes called.

My father's one of them. Next week makes three years since a neurosurgeon looked Dad in the eye and told him with 100-percent certainty that he has amyotrophic lateral sclerosis, a disease that would eventually paralyze him but leave his mind intact. Next April makes five years since Dad's foot curiously began to drag when he walked and caused him to trip, fall and struggle to stand back up.

Last May, Dad and I attended the ALS Association's national conference in Washington, D.C. For three days, we listened to presentations about medical research, attended vigils, and befriended lots of people — some who have ALS, others who are advocating for someone who does, and more than a few who are continuing the fight long after losing a loved one.

On the third day of the conference — a Wednesday that started sunny but turned to rain — groups of ALS advocates from all 50 states canvassed Capitol Hill and met with their legislators. Dad and I walked from one end of the Congressional buildings to the other — no small feat for a 61-year-old man with two leg braces and a cane.

We were joined by a terrific couple from Brunswick. The husband, a friendly guy named Tony, has ALS; he's my age, 35, and that day he had as hard a time as my father when it came to all of the walking we did.

We visited the offices of Sens. Olympia Snowe and Susan Collins and Reps. Tom Allen and Michael Michaud and urged that the legislators cosponsor the ALS Registry Act, which would allow the government to build a database of ALS patients that would hopefully reveal patterns and insights leading to breakthroughs in research and a cure. We also urged the legislators to support funding for the Department of Defense to study why there is a high number of ALS patients who have served in our military — people who have put their lives in harm's way to protect our freedom, only to be diagnosed with a disease that will rob them of their own.

In one case, we enjoyed good fortune before we even arrived at the Hill. Last year, Rep. Allen became one of the first legislators to cosponsor the bill. When we met with his aide in May, all we had to do was thank her for Allen's support and reiterate the need for a registry.

Going to Capitol Hill and advocating for my father and others with ALS is one of the most meaningful experiences of my life. And our hard work — Dad's and Tony's utter exhaustion at the end of that Wednesday — has paid off. All four of Maine's legislators are cosponsoring the ALS Registry Act, which now needs only the Senate's approval to be enacted.

Thank you, Sens. Collins and Snowe and Reps. Allen and Michaud, for your support. One day, scientists will find a cure for this mysterious, cruel and fatal disease, and you will have contributed greatly to the miracle.

I'd especially like to thank Rep. Tom Allen. He has done more than simply be one of the first legislators to support an ALS registry. He has literally also walked the walk.

On Sept. 13, the ALS Association held its annual "Walk to D'Feet ALS" in Portland. Scores of advocates gathered at the bay and walked more than three miles to spread awareness about the disease and cap a fundraising effort that surpassed $75,000.

Rep. Allen walked that day, trudging through the morning's raw air, cold downpour and forceful winds. He seemed to enjoy the walk; rather than rush through the rain at a rapid clip, he stopped along the way, spoke with others, and helped a friend with ALS get back into her van.

Rep. Allen knows the fight against ALS is a long one, comprised of many steps along the way.

All the time, people stop and ask me how Dad is doing. Sometimes I get asked two or three times a day. I'm grateful for their concern and support.

I'm a talkative fellow, so sometimes I catch myself giving long answers, in which I might mention the new walker he's purchased or refer to the fact that he's still able to socialize, stay involved with the community and enjoy his grandchildren. Lots of times, though, I just smile, thank people for asking, and say Dad's "hanging in there." There are good days and bad, I'll sometimes say.

Last week Dad found out about the ALS Registry Act's success with the Senate committee and told my family and me. We were thrilled.

In the never-ending fight against ALS, that's a good day.

Shawn P. Sullivan is the editor of the Sanford News. He can be reached at news sanfordnews.com.

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